Advocating for ROS1


One of the founders of the ROS1ders, Janet Freeman-Daily, shares her story and why she advocates for molecular testing, clinical trials, and the positive changes she’s seen. “Given that lung cancer patients often don’t have much tumor tissue, we should make the best use of it, and running an NGS test is the best chance … Continue reading Advocating for ROS1

Keep Reading Please! – A blog post by Corinne


Read about Corinne’s journey living with ROS1 positive lung cancer. “I didn’t realize it, but I was rapidly declining, dying, in late January 2016.” ” Were you WOWed reading that, knowing that I’m still here and functioning well three years after that? I was pretty darned impressed with what medical research has made possible.”

Learning and the Passage of Time – A blog post by Marisa


Marisa was diagnosed with Stage IV Adenocarcinoma in October 2015 at the age of 30. Read her inspiring post about completing grad school while living with lung cancer. “On January 12th, I submitted my final assessment for grad school. Four-hundred-and-sixty-eight days following my first footsteps into the Poli Sci department at UCL. I will never … Continue reading Learning and the Passage of Time – A blog post by Marisa

The Unnecessary Cruelty of Clinical Trials by: Lisa Goldman


Since I’ve been holding steady on my treatment, I haven’t needed access to a clinical trial yet. However, clinical trials may become essential to my survival, and I’m already concerned about getting into them when I need help the most. I often hear scientists ask, “how can we increase patient participation in clinical trials so … Continue reading The Unnecessary Cruelty of Clinical Trials by: Lisa Goldman

ROS1ders Meet the Rodents


What happens when you tell someone they have a terminal diagnosis and potentially less than a year to live? They cry, get scared, worry about the loved ones they will leave behind, and grieve. And if they are anything like the ROS1ders, they organize and make stuff happen. It has not been easy, and along … Continue reading ROS1ders Meet the Rodents

NCI Features the ROS1ders on its CCG Blog


Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway! ———————————————- ROS1+ Cancer Patients Partner to Increase Research May 23, 2017, by Janet Freeman-Daily, MS, Eng In May 2015, I met four friends in a bar near Washington, … Continue reading NCI Features the ROS1ders on its CCG Blog